Out of an abundance of caution….

So, yesterday, I got the call from Nurse Ratchet, “Out of an abundance of caution we are going to remove you from the study.”

To catch everyone up, last week I had an allergic reaction. Last Wednesday I finished up a round of amoxicillin due to an upper respiratory infection and did a Nexvax injection. Thursday I went to Nashville to do a food challenge that caused me to vomit and just have a lousy day.

Friday my hand started to swell. It started on my ring finger. By Friday night, my hands were so swollen they looked like Mickey Mouse hands and I was worried about not being able to breathe. I went to the ER and they gave me Benadryl and prednisone to stop the allergic reaction. It has taken me until today to truly recover and for my body to return to close to normal.

At this point, I’m doing fine. I’m running at 90%.

We don’t know what caused the allergic reaction. We don’t know why it was so severe. Was it the amoxicillin? Was it Nexvax? Was it the food challenge? Was it a systemic nickel reaction due to my wedding rings? We just don’t know. Because we don’t know, its been deemed dangerous enough that I should stop the study.

As much as I hate to admit it, they are probably right. Because we don’t know the cause and I cannot be unmasked in the study – this is the right course. My health and well-being are far more important than this study. Making sure I’m well is paramount.

This is an “adverse event” and will have to be reported in the findings of the study. I don’t know if I’m the only one to have this or if there will be others. Remember, I’m one of the earlier people in the study protocol. I think I was one of the first 25 or so dosed in this phase of the study. So, there are 125 others out there that are still working through the process.

I was FOUR doses away from completion of the study. So, while I may not have completed it, I got almost 90% of the way through. So, if you are going to wash out, as much as it sucks, I’ve gotten the most benefit out of it . I don’t have to do another food challenge or endoscopy! Yay!

My family is exhausted from the study. I’ve worn them out with the travel and me not being home. My son said in the car today that he was worried about me every time I went to Nashville and he’s glad its over. My husband is happy I’m better. My daughter is sick today and just happy to be home watching Twilight. My mom is just plain tired.

My next steps are to figure out if I have another autoimmune disease. Talk to the doctors about whether I have a systemic nickel issue or not. Talk to the doctors abut whether I have an amoxicillin allergy. I’ve backed off exercise and cleaned up my diet and am feeling better, but what are the next steps in my journey to health? If Nexvax is approved, do we think I can take it or am I a cautionary tale?

I’m sorry I washed out. It is as disappointing to you as it is to me. I’ve taken a day to get through the mourning, anger, and second guessing. I’ve been on pins and needles for 10 days waiting for this decision – waiting, knowing the decision is beyond my control. I’ve begged and pleaded to stay in, but I cannot. Decisions have been made that cannot be unmade. It is.

So, that’s where I am today.

I will look into the other drugs as I promised and give everyone an update on the drug trials tomorrow!

One thought on “Out of an abundance of caution….

  1. Well done on participating in the trial. I can understand that you are disappointed you weren’t allowed to continue but you can be proud you have taken part in this ground breaking research.
    I am currently enrolled in the trial here in Melbourne, Australia and have found it to be an interesting experience including the dreaded gluten challenges!

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